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Clinical Trials in Italy / NCT07275099
Active, not recruiting Observational

Quality of Life, Psychological Impact, and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome.

NCT07275099 · tracked via the Priya Life Science Italy tracker
Sponsor
IRCCS Ospedale San Raffaele
Phase
Observational
Started
2026-05-01
Last updated
2026-05-11

Condition(s) studied

VHL - Von Hippel-Lindau Syndrome

Study summary

This is a single-centre, cross-sectional observational study aiming to assess the psychological burden, quality of life, and perceived barriers to care in patients with von Hippel-Lindau syndrome (VHL). Data will be collected through an anonymous online questionnaire, specifically designed for the study and administered via Google Forms.

Eligibility

Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria: * Age ≥18 years * Genetically confirmed diagnosis of von Hippel- Lindau syndrome Exclusion Criteria: * Inability to understand or complete the questionnaire, either independently or with assistance

Primary outcome measure(s)

  • Completion of a self- administered questionnaire — Single time point (approximately 25-30minutes).
    The research activity consists in the anonymous collection of patient- reported data through an online questionnaire. No diagnostic, therapeutic, or experimental interventions are foreseen. The study fully complies with the definition of non-interventional observational research.

Trial sites (1)

FacilityCityRegionStatus
IRCCS Ospedale San Raffaele Milan MI

More IRCCS Ospedale San Raffaele trials in Italy

Spatially and Temporally Resolving Predictive Biomarkers of Postoperative Recurrence and Complications in Chronic Intestinal Inflammation Recruiting
The Echodynamic Approach Recruiting
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Non-Invasive Programmed Stimulation (NIPS) to Guide the Subsequent VT Therapeutic Strategies Recruiting
CAT-VHL Exploring the Role of Carbonic Anhydrase IX as Diagnostic and Theranostic Target in Von-Hippel Lindau Disease Recruiting

Other trials for the same condition

CAT-VHL Exploring the Role of Carbonic Anhydrase IX as Diagnostic and Theranostic Target in Von-Hippel Lindau Disease Recruiting
Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT07275099 on ClinicalTrials.gov ↗ ← All trials in Italy